Wednesday, July 31, 2013

Three Good Days

As frustrated as I have been over the past couple of months about being kicked around by my RA, I have had three really good days off and one so-so day off this week. I can't explain it but I don't really expect my good fortune to stay with me as I go back to work Wednesday night.

While doing research on other RA drugs, I did run across some interesting data. Below is an excerpt from one article I came across.

"Despite the many biologics now available and the hope of more individualized therapy, half of U.S. patients with rheumatoid arthritis stopped these meds within 2 years. There seems to be a high rate of discontinuation that may be attributed to multiple factors -- lack of efficacy, adverse events, patient and physician preferences, and expectation bias." This data was collected in a study by Vibeke Strand, MD, of Stanford University in Stanford and presented at the annual meeting of the European League Against Rheumatism. She noted "this was a very rapid decay in the durability of therapy."

In some cases, biologic drugs will work for a while and then become less effective. It’s not clear why this occurs. It's not uncommon to try more than one biologic before finding one that helps your RA significantly. Fortunately, there are several biologic drugs to choose from. If one doesn’t work, chances are good another will. According to the Arthritis Foundation, most people eventually find a biologic that helps them, although the degree of relief varies. Some people feel partial relief, while others go into remission and are symptom-free. While I would love to be in the "go into remission and be symptom free" I have cashed in all hope for reality on this.

I mowed (we finally got some rain last week), went for two rides, cleaned up my music room and built a rifle cleaning cradle on my days off this week. We did a 160 mile ride down into the Ouachita National Forest and were met with several snakes, tons of deer (you hunters aren't doing a very good job) and one suicidal squirrel who lived to play his silly little game another day. Felt great to feel like doing things again!

KCS railroad bridge in the Ouachita National Forest.

Old Poteau River bridge at Heavner, OK.

Old Huntington Jail built in 1888.

Rifle cleaning cradle I built with no plans for $5.

Oh, I almost forgot ... got to ride in and drive my daughters new Challenger RT. It is the Hemi with the suspension upgrade and special wheel package. Bottom line is the 384 hp was freakin' incredible.

10
comments:

Hi Terry,I've been reading your blog for a while and feeling for your plight. I've been on Enbrel twice (I lost access for a few months because i lack insurance) and find it works well for me. I have gone from conditions similar to your own to full remission both times. This experience has shown me something important about the biologic therapies though, Consistency! The first time I went on Enbrel, I reached Remission in the first 2-3 Months with significant relief within a month of starting. When I finally got to restart the Enbrel it took over twice as long to achieve remission and I did not start to get significant relief for 3-4 months.I hear a lot of people talk about taking a "Rest" from thier medications and I want to shake them back to reality! This disease is ALWAYS going to be there... "Remission" is not getting RID of it. Whatever treatment we find that works for us we each should fight like hell to keep it going no matter what! I am convinced that is the key to long term relief (if such a thing exists).Remission is a Miracle if you can get there, but there are still bad days and fatigue... just not as bad. As hard as you are fighting to drive yourself to DO the things you enjoy, I'm sure you would shrug off a little stiffness and feeling like you need a nap sometimes!Ride on! Your blog really inspires me to look forward, swallow hard and get moving!Russ...

Russ, good to have you following me and glad you left a comment. Enbrel worked great for me for 5+ years before it started losing its effect. Next I tried Orencia (never really worked for me) and Humira which I am still taking now. I am hopeful that I may again find something that worked as well as Enbrel did. I have heard the same about people wanting to stop or cut back drastically on their meds once they are doing better. You're right, there is no cure for RA, we will always have it. I have never enjoyed remission but it sounds wonderful and am happy for those that do experience it. I will continue to ride, it's a big part of what keeps me going by having something to look forward to. Thanks for the comment, its comments from readers that often times inspire me and keep me going.

As always nice pictures. Interesting information on medication use. The people I don't get are the people who have success with a med regime and then stop taking them. I saw one woman go into remission,stop her meds,and then crash. She did this over and over again. Not me man, if I can get into a drug induced remission I'll take those drugs forever. Hope your good days outnumber the bad.

Hi Terry,Glad you were able to get some riding in. I know the day I can't ride anymore will be the end of me. I used to worry about that but then I realized I could get a 3 wheeler and I saw a custom bike show where they redesigned a guys Harley so he could drive it from his wheel chair. Essentially they switched the side car and bike. His wife sat on the bike while he drove from the side car. Wow, I was blown away by that. It gave me hope of never having to stop riding.

As far as meds go, I usually keep my feelings on that to myself. I think I am a small percent of the population who have never been able to tolerate medications. After trying many of them with little improvement in the RA but with side effects that made me nonfunctional, I am sans meds. I chew a few aspirins, get massages and do yoga when I can. I know there may come a day when the disease will be worse than the side effects. Right now, I still have good days. It's always one day at a time.

I wish everyone good results with any thing that brings them relief. It's amazing how we are all humans and yet our bodies behave so differently from each other.

Terry,Thanks for pointing out the failure rates of biologicals as they are higher than most people think. I'm on my 6th biological and quickly giving up hope on that one. Love the Challenger story. My neighbor has a 2012 Challenger special edition and it's 500hp is a blast!Andrew

Kim, it felt great to just feel like wanting to go ride for a change. The last few rides I had done I just absolutely made myself go ... I knew I would enjoy it once I got out (and I did). Thats wild about the Harley you drive from the side car. You wouldn't have a link to a story or photos of it would you?

I wish you well with your non treatment routine, I understand about the side effects. I think that most RA patients live one day at a time regardless of their treatment plan. Hope you are getting some rides in.

Hello Andrew, even though I have experience with the biologics, it surprised me. I think most of the general populations knowledge of biologics come from Enbrel commercials which it make it look like as soon as you take an injection, you can go do anything you want. Boy if that were only the case!!

The Challenger brings back old memories. I had a friend that had a 74 Challenger ... all I can say is we lived through it.

About Me

I live with a chronic disease (RA) but still ride all that I can. Riding is my therapy. RA is a strange disease to live with, one day it is all I can do to get out of bed and walk to the living room, the next day I may go ride 150 miles. I do not live or ride pain free but will not give up on enjoying life. I have been reduced to adventure riding, the least strenuous type of off road riding. RA limits my mileage to 150-200 miles a day. I currently own a 2013 KLR650 which I ride every chance I get.